“The surgery went well, with no complications, and the new heart and lungs are functioning beautifully.” Aug. 7 marks the seven-year anniversary of posting that miraculous update to my son Cullen’s CaringBridge journal. Living without pulmonary hypertension (PH) has undoubtedly changed his life for the better, but Cullen, 21,…
Columns
“What’s the one thing you wish people knew about your transplant journey?” It’s one of the most thoughtful and thought-provoking questions I’ve ever been asked. It was posed to me six months after the momentous discharge that followed my traumatic heart-lung transplant. I remember looking up at my friend…
I haven’t always identified as disabled, even though I lived with disability long before my initial pulmonary hypertension diagnosis in 2016. Adjusting to life with a chronic illness that affects breathing awakened a connection inside me to disability as part of my identity — one I felt had been…
I will turn 50 in October, and I have ignored worsening symptoms alerting me to a possible health concern for many years. I finally decided it was time to face what I was avoiding and schedule a doctor-recommended upper GI endoscopy and colonoscopy. As the anesthesiologist was preparing…
Something about sunshine boosts my mood. Do you find that to be true, too? For me, warmer months bring to mind fun memories of childhood traditions. When I was growing up, my family had a camp on the water. Family picnics, and beach and boat outings are some of my…
I have read that the heart is the hardest working muscle. If you’ve ever seen an echocardiogram of a heart laboring against pulmonary hypertension (PH), you’ll agree. But anyone who doesn’t give the heart credit for being the strongest muscle has never met a grieving mother. In an email…
I didn’t truly realize how messy of a person I was until I went to college and spent more than four years living in small spaces with others. Growing up, my room would always become quickly disorganized, but this was typical teenage behavior no different than my older siblings’. Every…
Deck the pool chairs. Fire up those outdoor grills and Hallmark movies, because we’re celebrating Christmas in July! You might view this as an odd way to start a column, especially considering the extreme heat many of us just sweltered through across the U.S. But for me, it’s a…
I recently dreamed that I was walking toward a hospital room to visit my son, Cullen. A doctor stopped and told me that Cullen had died. I walked away in a state of shock, but then quickly returned in tears and begged for a chance to see him. When I…
My mind once seemed wired to focus on parts of me I wish I could change. Most of my life, I struggled to accept my reflection in the mirror. I spent a lot of time hoping for the scars to fade and the fluid retention to dissipate. I tore…
Living with a chronic illness or rare disease definitely comes with a price tag. There are added expenses related to medical equipment and devices, doctors’ appointments, tests and procedures, and of course, the cost of prescription drugs, which can really pile up month after month. I remember feeling incredibly frustrated…
Stress was familiar to me long before my son Cullen was diagnosed with pulmonary arterial hypertension (PAH). Bruce Springsteen sings about being “Born to Run,” but when you run, you might trip. I was born to worry about things like that and so much more. Not that I…
